Patients with Hereditary Hemorrhagic Telangiectasia (HHT) Gain Full Access to Critical Health Data Management Platform

DOVER, Mass., July 18, 2019 /PRNewswire/ — Cure HHT and Backpack Health today announced a partnership offering the Hereditary Hemorrhagic Telangiectasia (HHT) community Backpack’s health data management platform, a cloud-based mobile tool that enables patients to store personal health records securely on any device. The platform provides patients and their caregivers full access to and control of their health information, with the ability to translate, share and transport all data on any device.

“We are proud to partner with Backpack Health and offer their comprehensive health data management tool to patients, further empowering the HHT community,” said Marianne Clancy, executive director of Cure HHT. “Backpack Health’s seamless platform eases the daily burden of managing health, with its ability to share information with health professionals and family members. We are excited to expand and improve our plethora of resources for the HHT community.”

A cruel and unrelenting disease that affects families for generations, HHT is a rare autosomal dominant genetic disorder that leads to abnormal blood vessel formation in the skin, mucous membranes, and often in organs such as the lungs, liver and brain. Only 10% of the people who have HHT are aware of it. The most common symptom is frequent nosebleeds, but it can have more severe consequences such as a stroke or death if not managed properly. Those who don’t know they have HHT are at risk for dangerous complications. The disease is just as common as ALS but not as well-known and difficult to diagnose.

Backpack Health and Cure HHT are also partnering to collect de-identified, aggregated data. Upon patients’ consent, individuals who join the Hereditary Hemorrhagic Telangiectasia Patient Directed Registry in Backpack Health will have their data de-identified and entered into the registry to advance research and understanding of HHT.  

“Due to HHT’s diagnostic difficulty and hereditary nature, Backpack Health’s ability to track symptoms and share family medical information is especially important for the HHT community,” said Jim Cavan, CEO and co-founder of Backpack Health. “We support many rare disease communities, helping patients take control of their own health as well as contribute meaningful data to medical research, and we are thrilled to extend our support to the HHT community and continue to break barriers.”

Backpack Health users can join the Cure HHT group via the following link:

About Cure HHT
Cure HHT is an international advocacy organization for people with the rare hereditary disease HHT, also known as Osler Weber Rendu syndrome.  For twenty-seven years, Cure HHT has been building awareness, educating the public, leveraging funding for research, and advocating for patients and families affected by HHT.  

Media Relations Contact for Cure HHT:
Marianne Clancy, RDH, MPA
Executive Director
Cure HHT
(410) 357-9932

About Backpack Health
Backpack Health, LLC builds secure, innovative information tools to help people manage their health journey – including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks and does not share any user data with third parties, including social media companies. Learn more at

Media Relations Contact for Backpack Health:
Elie Klein
Finn Partners

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SOURCE Backpack Health

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